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A New Chapter

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User
Posted 08 Sep 2017 at 18:25

Just catching up with posts now I'm home Steve and again, I'm sorry to read your news.

 

Could you perhaps speak to your consultant's secretary and ask for at least a telephone consultation to put your mind at rest?

We can't control the winds - but we can adjust our sails
User
Posted 08 Sep 2017 at 18:26

Duplicated post

We can't control the winds - but we can adjust our sails
User
Posted 08 Sep 2017 at 18:54

Hi Steve,

Sorry to hear your news - its an anxious time.  Keep posting your up-dates - I feel sure everyone is thinking of you and supporting you in this.  Take care

 

User
Posted 08 Sep 2017 at 19:39
Hi Steve

Sorry to hear of the PSA rise. If the rise is as you expect in December I would suggest asking for a PET/CT Scan or similar to pinpoint the area of concern, but let hope it is a blip.

All the best

Roy

User
Posted 09 Sep 2017 at 07:41

Hi Steve

don't start panicking yet, Tony was diagnosed gleason 9 T3B spread to seminals in 2006. he had ht and rt. he has been on and off ht ever since, he is still here with no side effects apart from hot flushes. whenever he has had to go back on ht his psa has gone down almost straight away to almost undetectable.

regards Barbara.

User
Posted 10 Sep 2017 at 09:09
Steve

Disappointing to hear about the rise but as others have said there will be options. Take care of yourself and stay positive.

Thanks Chris

User
Posted 10 Sep 2017 at 13:08
Steve

Thinking of you in these worrying times.

Ulsterman

User
Posted 10 Sep 2017 at 18:32

Hi Steve,
I would start asking for monthly PSA tests, not sure of your Gleason score your Onco will advise you when / if you should look at going back on HT,
I was on 2/3 monthly tests and my PSA was going up to 1.70 when it suddenly went down to 1.40 , they then said we will put you on four monthly tests as your PSA has gone down, I did think then that is the F@@@@@G kiss of death and I was right four months later PSA 3.02 and had a scan spread to bones , be careful
Barry

PS I am now lining up early Chemo six sessions {based on Stampede results} and back on HT but it was hard work getting Onco to look at this treatment path.

User
Posted 11 Sep 2017 at 14:27

Hi Steve
Sorry about your latest results but hopefully nothing to worry about.
It might be advisable to talk to your onco or nurses before your appointment though.
Paul

User
Posted 24 Nov 2017 at 02:52
Hi,

Starting to feel a bit nervous about the next few weeks leading up to Christmas.

After my bigger than expected rise (by me anyway) in my PSA figures in my last blood test on September 1st, my next test is due next week or two.

Worse too is that I have to wait until my Oncology appointment on December 19th to find out the results.

I just hope that Christmas isn't spoilt by any bad news.

Steve

Edited by member 24 Nov 2017 at 02:56  | Reason: Not specified

User
Posted 24 Nov 2017 at 07:31

Hopefully it will be ok Steve. I’m in the same boat —- a blood test for everything on the 5th and Onco 8th. My psa is expected to have doubled to around 15 :-(.
I’m just dreading the words scans , Chemo and Abi. Best wishes

User
Posted 24 Nov 2017 at 08:20
Steve

Being nervous is better than worrying, hope all goes well.

Thanks Chris

User
Posted 24 Nov 2017 at 10:48
Hi Steve

Always a bit of trepidation but try not to worry as all you will achieve is to waste time that could be spent enjoying yourself. You will deal with the results when you get them the same as you have dealt with everything else that has been thrown at you.

All the best to you.

Kevan

User
Posted 24 Nov 2017 at 16:47
Hi Steve, It's always the same waiting for test results with a bit of dread at the back of your mind. Hopefully you can find things to occupy your mind to reduce the nervousness. Wishing you all the best, Ian.

Ido4

User
Posted 26 Nov 2017 at 08:08

Hi Steve, just catching up with site news - don't come on here very often lately.  Will keep everything crossed for you (as I do for my o/h (whose PSA has also risen)  and all the other guys out there) its a sensitive time of year for a lot of people so as I said, will be thinking about you and wishing you well.  Take care now.

 

 

 

 

User
Posted 04 Dec 2017 at 06:08
Hi,

Thank you for your nice comments.

My apprehension over my PSA test have been overshadowed by recent events.

For those who don't get to see my facebook page, you wouldn't know that in the early hours of Saturday morning, my Mum passed away. Fortunately I was with her when it happened, so she didn't die alone. She had lived a long life but it still seems she was taken too soon.

She was the best Mum anyone could have. I was very lucky.

Rightly or wrongly, I never told her about my cancer or my heart attack. I didn't want her final years to be spent worrying about my health, which she would have done. It wouldn't have been fair on her. I hope if she knows now, looking down on me, she would forgive me for that.

Live will never be quite the same again.

Steve

User
Posted 04 Dec 2017 at 07:35

Hello Steve
I am so sorry to hear about your Mum but am glad you where with her at the end.
My thoughts are with you at this sad time.
regards
Barbara

User
Posted 04 Dec 2017 at 09:56
Steve

So sorry to hear about your mum, please accept our sincere condolences. Mums are so special,I still miss mine and shed a tear many years after her passing. I took some comfort that I was with my mum at the end and I hope it gave her some too.

Take care of yourself, thinking of you.

Love Chris and Dawn

User
Posted 04 Dec 2017 at 14:53

Hi Steve,

Sorry to hear about the loss of your mum. My mum died about the same time but a few years back and it’s hard. I hope you are able to deal with all that’s required easily.

Hope your oncology appointment on the 19th goes well and you get some positive news.

Best wishes,

Arthur

User
Posted 04 Dec 2017 at 16:11

Very sorry to hear the news about your mum Steve. Always very sad losing someone.

Will be thinking about you and the rest of the famliy.

Take care, Ian.

Ido4

User
Posted 04 Dec 2017 at 17:34
Hi Steve

Very sorry to hear the news about your Mum as no time ever seems to be the right time regardless of age or state of health.

You evidently thought the world of her and to have dealt with your own health problems in the way that you have without adding to her worries is testament to the type of guy you are.

All the very best with the test result on the 19th. Let us know how you get on.

Kind regards

Kevan

User
Posted 04 Dec 2017 at 21:00
Sorry to read about your mum Steve, my sincere condolences, Kev

Dream like you have forever, live like you only have today Avatar is me doing the 600 mile Camino de Santiago May 2019

User
Posted 05 Dec 2017 at 07:17

. 

Morning Steve, so very sorry to hear that news.  What a comfort to you and I hope to your Mother that you were together right to the end.  I am sure everyone is being supportive to you at this sad time.  I lost my own mother this time of year - so do understand how you are feeling.  As I said to her the night before she passed away, I have the best mother in the world - very wisely she said to me 'we all think that' and I guess she was right but it hurts.  You take care now and I know you will be supported both with your family, wider circle of friends and this community.

User
Posted 05 Dec 2017 at 07:18

. 

Morning Steve, so very sorry to hear that news.  What a comfort to you and I hope to your Mother that you were together right to the end.  I am sure everyone is being supportive to you at this sad time.  I lost my own mother this time of year - so do understand how you are feeling.  As I said to her the night before she passed away, I have the best mother in the world - very wisely she said to me 'we all think that' and I guess she was right but it hurts.  You take care now and I know you will be supported both with your family, wider circle of friends and this community.

User
Posted 05 Dec 2017 at 07:18

. 

Morning Steve, so very sorry to hear that news.  What a comfort to you and I hope to your Mother that you were together right to the end.  I am sure everyone is being supportive to you at this sad time.  I lost my own mother this time of year - so do understand how you are feeling.  As I said to her the night before she passed away, I have the best mother in the world - very wisely she said to me 'we all think that' and I guess she was right but it hurts.  You take care now and I know you will be supported both with your family, wider circle of friends and this community.

User
Posted 06 Dec 2017 at 11:32
Hi,

Thank you for all your kind words, they do mean a lot to me.

On Monday I finally had my PSA blood test. When I got there, I found there were 52 people ahead of me in the queue. I felt like going home again but thought I'd better stay. Anyway I only had to wait an hour so it wasn't quite as bad as it could have been. At least it's done now, just have to wait until the 19th to see the onco when I'll get the results.

Steve

User
Posted 06 Dec 2017 at 11:43

Hi Steve

A bit late reading about your mum. So sad to read that and yes like many mothers she will understand your reasons. Hope the result is a good one.

Ray.

User
Posted 30 Dec 2017 at 11:10

Hi,

I hope everyone had a nice Christmas.

I've just entered the Reading Half Marathon, due to take place in March, to raise money for Prostate Cancer UK.  It will give me something to focus on apart from my PCa. 

As some of you know, I "ran" last year's race.  This year I hope to be better prepared as last time I was still suffering the effects of my hormone therapy.  That is definitely out of my system now and hopefully will help me to do a better time. 

This could be my last chance to be in this position as two days after the race, I'm due to see the oncologist to discuss my rise in PSA.  My recent test revealed a larger than expected rise to 2 and if the next test in March shows the figures are still rising at the same rate, she could put me on hormone therapy again.  I'm not looking forward to this possibility as it will mean that this will be for life as the radiotherapy I had, will have failed.  

I'm keeping my fingers crossed.  I've been through enough.

Steve

 

User
Posted 30 Dec 2017 at 12:27

Well, I'll keep my fingers, toes and eyes crossed for you too Steve, and good luck with the half marathon.

You can do it !!

We can't control the winds - but we can adjust our sails
User
Posted 30 Dec 2017 at 13:41
Steve

Good luck for the race.

Sorry to read of your concerns about possibly of needing more hormone therapy. Fingers crossed you won't need it.

I've avoided Reading since surgery but looks likely I'll be going there again for radiotherapy soon as my PSA has now shown two sustainable rises. I see the oncologist on Wednesday. I'm going to ask for Bracknell - the cancer centre there is apparently very good.

Ulsterman

User
Posted 30 Dec 2017 at 14:59
Another runner! I’m also a runner. Ran 2 marathons a week apart at the start of April as training runs for an ultra. Managed around 3.50 on both. Then my “groin strain” was diagnosed as adavance stage PCa widespread through the bones and the pain was caused by stress fractures of the pelvic bone caused by running on cancer weakened bones. Started HT straight away and so far it’s kept the PSA at none registerable levels (although blood tests next week may say otherwise). Took me 2-3 months to get back to running and it’s been so tough without testosterone. I’ve gone from just behind my clubs fast runners to just ahead of the slow ones! Confidence was badly affected and the stress of diagnosis and treatment didn’t help. I ran Manchester Half in October to raise money for Christies and was expecting to come in around 2.15 (1.39 the previous year) but somehow managed 1.56 and was elated. I’ve always loved my running but now I quite often find it soul destroying but I do know that I have to stick at as the exercise helps with the fatigue. How has the PCa impacted on your running?
User
Posted 30 Dec 2017 at 17:20
Good luck for the race Steve. I hope you can avoid going back on HT, keeping everything crossed for you. Ian.

Ido4

User
Posted 31 Dec 2017 at 09:35

Hi Steve
if you do have to go back on hormones don't' think that it will be necessarily for life, my husband has been on and off them for years one time it was only 6 months, as soon as his psa has gone back to almost zero he has been taken off them. He went back on them at the beginning of this year and was told he would be on them for good but this is 11 and half years from when he was diagnosed. his only other treatment was RT.
regards Barbara

User
Posted 01 Jan 2018 at 06:26

Hi,

Thanks for your replies to my messages.

Tony...Having hormone treatment definitely affected my ability to take exercise, especially running.  I found it really difficult to cope with the fatigue I was suffering.  I'm sure I will find the Reading Half easier to handle than the last time.  I was a very active runner at one time but since my cancer diagnosis, my heart attack and ongoing heart problems I have found it so hard to continue exercise like I used to.  Good luck in your races, your fitness can only help your treatment.

Barbara...Hormone treatment seems to have worked well for your husband and it would be nice to think that I would be able to enjoy "Hormone Holidays" too, but it took me over a year after stopping HT for the effect of my therapy to wear off.  I think that what was disturbing was that my PSA was rising even while under HT.  I know it's not the end of the road as far as my treatment goes and I could live as long as your husband but it's more of a feeling that my chance of a cure may have gone forever.  I could be on a new journey which may end with my death.  I would have liked to have lived to see my grandkids grow up.  What's happening now could mean that would never be possible.

Steve

Edited by member 01 Jan 2018 at 06:33  | Reason: Not specified

User
Posted 01 Jan 2018 at 12:39
Good luck with the run Steve and happy new year. Your comments about seeing your Grandchildren grow up certainly resonates with me. I have a 4 year old Grandson that I dote on and found on Xmas day that I have another one due in June. It breaks my heart that I may not see the 4 year old become a teenager or the new one walk/talk etc. I hate this f%%%%%%g disease with such a passion!
User
Posted 13 Feb 2018 at 18:51

Hello Steve, 

I'm sorry to hear you're feeling down.Is your PSA currently 2?  Why do you believe that you may die? Excuse my naiivity.

Which health condition gives you more worry? For myself, I worry about my heart disease.

With all your problems, I admire your determination to even enter a running race! I can't run 10 yards! The only exercise I can take, is to go out walking, or use my exercise bike.

Keep pestering your oncologist and health professionals. If they give you hormone therapy once more, wouldn't that be a good thing; besides the side effects of course. And don't think that you may not be cured - have you actually been told that?

 

 

Frank.

 

User
Posted 14 Feb 2018 at 10:05
Steve - I got a dog to take out on long walks. Not the same as your runs, but it does get me out of the house. On another note, I'm taking a bit of a career break, so if you'd ever want to meet up for lunch or a dog walk, we're not that far away from each other. PM me if you fancy it.

Ulsterman

User
Posted 15 Feb 2018 at 11:12

just catching up with things, sorry to hear about the rise in PSA. HT is horrible, I suffered mostly with hot flushes rather than fatigue. Fingers crossed for you.

User
Posted 13 Mar 2018 at 14:25
Hi,

Two days away from my next PSA test, results next Tuesday when I see my oncologist at my first appointment since December.

Feeling nervous about the outcome of that. It could be life changing.

Steve

Edited by member 13 Mar 2018 at 14:41  | Reason: Not specified

User
Posted 13 Mar 2018 at 15:28

Best wishes for Tuesday ,
Debby

User
Posted 13 Mar 2018 at 15:32
Steve

Hope all goes well with your appointment.

Thanks Chris

User
Posted 13 Mar 2018 at 15:36

I'm currently on holiday Steve and won't always be able to log on so I'll wish you good luck now in readiness for Tuesday.

We can't control the winds - but we can adjust our sails
User
Posted 13 Mar 2018 at 15:43

Good luck for next week Steve xx

 

User
Posted 13 Mar 2018 at 15:53
Hope all goes well for your test Steve. Try to stay positive.

I think I seem to follow you - I’ve got my PSA Test next week followed by appointment with oncologist on 22nd

All the best,

Arthur

Edited by member 13 Mar 2018 at 22:37  | Reason: Not specified

User
Posted 13 Mar 2018 at 16:09

Me too Steve. Psa and CT Friday. Full bone scan next Monday then results Fri 23rd. Good luck to us both. My psa expected to be around 24 :-//
It’s the scans I’m worried about as I feel FINE !!!

User
Posted 13 Mar 2018 at 17:21
I will be thinking about you Steve, hope it’s better news than you expect. I had a full body bone scan Monday 26/2/18 and have a pelvis MRI next Monday to check things are ok.

Nervous about that too.

Ian

Ido4

User
Posted 13 Mar 2018 at 19:32

Good luck Steve

Barry

User
Posted 14 Mar 2018 at 06:01
Wishing you all the best, Steve, take care, Janet
User
Posted 14 Mar 2018 at 15:36
Thank you everyone for your kind messages. They help a lot.

Good Luck to Arthur, Chris and Ian with your upcoming tests and scans.

You are a great group of people.

Steve

User
Posted 14 Mar 2018 at 15:45
Hi,

I was going to have my PSA test tomorrow, Thursday (15th) but suddenly remembered it was "The Ides of March".

Anyone who studied Shakespeare at school would know why I would want to avoid that date. So I'm at the hospital now, waiting for my blood test.

Steve

Edited by member 14 Mar 2018 at 15:49  | Reason: Not specified

 
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